My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 56 now. Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.
Over the years I’ve had my share of surgeries, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!
My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.
The List Of Chronic Illnesses Goes On and On
So now, in addition to my Fibromyalgia and Myofascial pain, I live with:
- Chronic Pain / Chronic Fatigue Syndrome
- Osteoarthritis (in all my major joints)
- Forestier’s Disease (aka D.I.S.H., a spinal condition affecting my thoracic spine)
- Type 2 Diabetes (on insulin)
- Trigeminal Neuralgia
- Bipolar Disorder
- Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
- Bone spurs on fingers on right hand, plus inflamed tendons in right palm
- High Cholesterol
- Raynaud’s Disease
- Brachydactyly Type E (a genetic bone condition I was born with)
Pam In Pain
I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the Myofascial trigger points, including Botox, but nothing helped. My Fibromyalgia wasn’t really treated other than putting me on Lyrica first and then Cymbalta, and that’s all the treatment I’ve had for it.
I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain-free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.
My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!
For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.
In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain. My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so.
The Future Is Full Of Hope
This year, I will be facing brain surgery as a result of my Trigeminal Neuralgia. I’ve run out of treatment options as the drugs I take no longer are effective. I’ve even tried Botox for my TN, but without good results, so I’m looking at a surgery called Micro Vascular Decompression to relieve pressure on the Trigeminal Nerve and hopefully it will leave me pain free!
So what have I learned through all of this?
- I am stronger than I thought I was, and I’m able to tolerate a lot more than I thought I could
- You need a team, or at least one good partner to help you when you live with health issues. For me, it’s my husband Ray. I couldn’t do this alone, but he makes everything better. He believes in me, he helps me physically with things I can’t do, and he never makes me feel like I’m “less than” for not being able to do things because of my physical pain or my fatigue.
- Pacing – you need to be able to pace yourself throughout the day in order to live your best life with chronic pain and fatigue. That means letting some things slide in order to accomplish a few other things. For example, Monday may be a day for sweeping and that’s it – dishes have to wait. Or, you do the dishes, but vacuuming gets put off until tomorrow. You need to learn how much energy you have and the best way to use it. If you haven’t read the Spoon Theory, it’s a good example to explain all about energy and how much it takes for us to do everyday ordinary things.
- You are enough, just the way you are. Period.
- Accept that this is reality but never give up hope for things to improve.
I struggle with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.
About The Author
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.